› Forums › General Melanoma Community › Moving On to Plan B
- This topic has 24 replies, 7 voices, and was last updated 11 years ago by
BrianP.
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- February 17, 2015 at 12:28 am
So, I had a great run with the GSK combo with ipi in between. I had ~4 months of reduction followed by ~14 months of stable disease. My latest scans from a few days ago show progression—3 new lung nodules and a new brain met (8mm). I'm otherwise (thankfully) asymptomatic and, interestingly, my existing tumors (mostly in my liver) were stable. Tomorrow I’ll have a gamma knife procedure for the brain met (I previously had one shortly after my initial diagnosis)–and I hope to start on pembro later in the week.
I did discuss pembro versus nivo with my onc. It sounds like nivo is not yet readily available and there isn’t a prevailing view that one is “better” (at the higher dosage/frequency, for ipi refractory, etc.) than the other at this point. I also discussed trials with my onc and a few other experts (supplementing my own research on these forums and clinical trial search engines) and there doesn’t seem to be an alternative that is clearly better. (However, if Rick Simpson starts a cannabis oil trial, please sign me up!)
Glass half full—hopefully I’ll get the so-called abscopal effect that Celeste has reported about on her blog. Obviously a time of uncertainty and anxiety—while I’m excited to have the opportunity to try PD-1 (it isn’t lost on me that the timing of my progression is fortunate with the recent FDA approvals), it is unsettling to have less options in the quiver. That said, I’m generally feeling ok about the situation. While I could certainly do without the brain met, I feel like we’ve caught the progression early. (By the way, I credit my “ok-ness” to a MBSR (mindfulness-based stress reduction) course I took last year and my continuing practice and reading in that area.)
One piece of advice for my fellow Stage IV-ers—insist on a MRI of the brain with each periodic scan, particularly if you've had a prior brain met. I have always done this. Insurance will sometimes push back, but your onc can appeal. That was the situation for me with these latest scans. Had we not pushed back, I wouldn’t even know about the brain met.
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- February 17, 2015 at 1:36 am
Good luck Mat.
Artie
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- February 17, 2015 at 1:36 am
Good luck Mat.
Artie
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- February 17, 2015 at 1:36 am
Good luck Mat.
Artie
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- February 17, 2015 at 10:49 pm
Good luck Mat…here's to PD-1 being your magic bullett!
Also thanks for heads up on MRI…I often think about this. I get like one a year. Both my surgical onc at NWM and my medical onc feel they're not overly important unless your're symptomatic. I've asked numerous times and both have said if you're NED and no symptoms…high unlikely so they deem unnecessary…I'm definitely going to ask for every 6 months. I know if I want it, they'll order it.
Josh
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- February 17, 2015 at 10:49 pm
Good luck Mat…here's to PD-1 being your magic bullett!
Also thanks for heads up on MRI…I often think about this. I get like one a year. Both my surgical onc at NWM and my medical onc feel they're not overly important unless your're symptomatic. I've asked numerous times and both have said if you're NED and no symptoms…high unlikely so they deem unnecessary…I'm definitely going to ask for every 6 months. I know if I want it, they'll order it.
Josh
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- February 18, 2015 at 9:32 am
I often think about this too. I have just had one brain scan and one pet scan right at the beginning, so there were 3 months where no treatment was working before I got onto pembro. I have asked for a brain scan with my next cts in May, but that will be nearly 11 months after the first scans. possibly the treatment would be the same even if I had a brain met?
Jubes
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- February 18, 2015 at 9:32 am
I often think about this too. I have just had one brain scan and one pet scan right at the beginning, so there were 3 months where no treatment was working before I got onto pembro. I have asked for a brain scan with my next cts in May, but that will be nearly 11 months after the first scans. possibly the treatment would be the same even if I had a brain met?
Jubes
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- February 18, 2015 at 1:47 pm
Hi Jubes, I just wanted to jump into the talk on" brain met treatment." If they find them early and when they are still small they can usually use cyberknife or gamma knife radiation treatments which have a good track record. I think that the brain is probably the most important region to have scanned in the body. I am not sure of the exact %, but most people that die from Melanoma is due to complication due to brain mets. I feel that if you fight for anything in the process it should be for regular scans. Wishing you the best!!! Ed
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- February 18, 2015 at 1:47 pm
Hi Jubes, I just wanted to jump into the talk on" brain met treatment." If they find them early and when they are still small they can usually use cyberknife or gamma knife radiation treatments which have a good track record. I think that the brain is probably the most important region to have scanned in the body. I am not sure of the exact %, but most people that die from Melanoma is due to complication due to brain mets. I feel that if you fight for anything in the process it should be for regular scans. Wishing you the best!!! Ed
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- February 18, 2015 at 3:49 pm
I totally agree with having head mri for us often. I went 7 months and that was after knowing two tumors were pressing on my brain plus one in my forehead. Very stupid on my part but after having almost being paralyzed with my spine I actually forgot about them. I got lucky the two smaller ones disappeared after just the biggest one was radiated. It's about the same size and my 3 month mri is coming up with my radiation doc on March 9th. I think I read somewhere about half of us lose our battle because of the stuff in our brain. So yeah we should all get a head mri regularly just like our other scans in my opinion.
Artie
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- February 18, 2015 at 3:49 pm
I totally agree with having head mri for us often. I went 7 months and that was after knowing two tumors were pressing on my brain plus one in my forehead. Very stupid on my part but after having almost being paralyzed with my spine I actually forgot about them. I got lucky the two smaller ones disappeared after just the biggest one was radiated. It's about the same size and my 3 month mri is coming up with my radiation doc on March 9th. I think I read somewhere about half of us lose our battle because of the stuff in our brain. So yeah we should all get a head mri regularly just like our other scans in my opinion.
Artie
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- February 18, 2015 at 3:49 pm
I totally agree with having head mri for us often. I went 7 months and that was after knowing two tumors were pressing on my brain plus one in my forehead. Very stupid on my part but after having almost being paralyzed with my spine I actually forgot about them. I got lucky the two smaller ones disappeared after just the biggest one was radiated. It's about the same size and my 3 month mri is coming up with my radiation doc on March 9th. I think I read somewhere about half of us lose our battle because of the stuff in our brain. So yeah we should all get a head mri regularly just like our other scans in my opinion.
Artie
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- February 18, 2015 at 1:47 pm
Hi Jubes, I just wanted to jump into the talk on" brain met treatment." If they find them early and when they are still small they can usually use cyberknife or gamma knife radiation treatments which have a good track record. I think that the brain is probably the most important region to have scanned in the body. I am not sure of the exact %, but most people that die from Melanoma is due to complication due to brain mets. I feel that if you fight for anything in the process it should be for regular scans. Wishing you the best!!! Ed
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- February 18, 2015 at 9:32 am
I often think about this too. I have just had one brain scan and one pet scan right at the beginning, so there were 3 months where no treatment was working before I got onto pembro. I have asked for a brain scan with my next cts in May, but that will be nearly 11 months after the first scans. possibly the treatment would be the same even if I had a brain met?
Jubes
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- February 17, 2015 at 10:49 pm
Good luck Mat…here's to PD-1 being your magic bullett!
Also thanks for heads up on MRI…I often think about this. I get like one a year. Both my surgical onc at NWM and my medical onc feel they're not overly important unless your're symptomatic. I've asked numerous times and both have said if you're NED and no symptoms…high unlikely so they deem unnecessary…I'm definitely going to ask for every 6 months. I know if I want it, they'll order it.
Josh
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- February 17, 2015 at 11:40 pm
Awwe, man! Sorry, Mat. You seem to be handling it like a trooper and have a good plan. Not only has research cconfirmed that the abscopal response is real….more and more data is indicating that radiation combined with ipi, brafi, and anti-Pd1 is resulting in better results for patients (more trials offering those combo's indicate that as well) in a way that is not quite, technically, an abscopal response in that distant tumors die, but one in which response and duration of response increases for those patients. Either way…I like it and hoping you reap such benefits as well. Hang in there! Celeste
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- February 17, 2015 at 11:40 pm
Awwe, man! Sorry, Mat. You seem to be handling it like a trooper and have a good plan. Not only has research cconfirmed that the abscopal response is real….more and more data is indicating that radiation combined with ipi, brafi, and anti-Pd1 is resulting in better results for patients (more trials offering those combo's indicate that as well) in a way that is not quite, technically, an abscopal response in that distant tumors die, but one in which response and duration of response increases for those patients. Either way…I like it and hoping you reap such benefits as well. Hang in there! Celeste
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- February 17, 2015 at 11:40 pm
Awwe, man! Sorry, Mat. You seem to be handling it like a trooper and have a good plan. Not only has research cconfirmed that the abscopal response is real….more and more data is indicating that radiation combined with ipi, brafi, and anti-Pd1 is resulting in better results for patients (more trials offering those combo's indicate that as well) in a way that is not quite, technically, an abscopal response in that distant tumors die, but one in which response and duration of response increases for those patients. Either way…I like it and hoping you reap such benefits as well. Hang in there! Celeste
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- February 18, 2015 at 7:30 pm
Thanks for the kind words. My gamma knife procedure went well and I'll receive my first pembro infusion tomorrow.
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- February 19, 2015 at 3:15 am
Good to hear Mat. Good luck tomorrow. Sometimes while I'm getting my nivolumab infusion I stare at that clear bag of what looks like water and simply marvel at the technology behind it. I think you have a great plan and have every reason to be optimistic.
Brian
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- February 19, 2015 at 3:15 am
Good to hear Mat. Good luck tomorrow. Sometimes while I'm getting my nivolumab infusion I stare at that clear bag of what looks like water and simply marvel at the technology behind it. I think you have a great plan and have every reason to be optimistic.
Brian
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- February 19, 2015 at 3:15 am
Good to hear Mat. Good luck tomorrow. Sometimes while I'm getting my nivolumab infusion I stare at that clear bag of what looks like water and simply marvel at the technology behind it. I think you have a great plan and have every reason to be optimistic.
Brian
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